Today Chris had appointments with the pulmonologist for the first time, and then his allergist, whom we’ve been seeing for forever. The appointments went well, as well as they could have gone. We are making strides to figure out the cause behind everything. It’s all connected somehow, and we haven’t stopped looking.
Here’s the update I put on my Facebook page:
My brain is so overwhelmed. It was a good appointment day but lots and lots of information being thrown at me today.
1. He’s being recommended for Xolair shots. This should theoretically help asthma and allergies.
2. Changing his rescue inhaler to not albuterol. (I don’t remember the name right now but will find it.)
3. Asthma still not well controlled.
4. He will need surgery to clear out his sinuses and to culture the fluid in there.
5. Starting cromolyn again to help with Eoe symptoms and stomach pain.
6. NK (natural killer) cell test came back low again which means it wasn’t a faulty test the first time. Doctor is requesting a full genetic panel done.
7. Pulmonologist wants to test him for PCD. (https://ghr.nlm.nih.gov/condition/primary-ciliary-dyskinesia). He doesn’t have the internal organs out of place but not every case does.
I’m sure there’s more I’m forgetting. My Brain is so tired and overloaded right now.
His sinuses, we discovered, are not connected because they’re full of inflamed tissue and probably mucous. The ENT and I discussed this surgery possibility on Monday and she doesn’t want to do it until we find the underlying problem. The allergist today says she wants the surgery done because the Xolair shots will take care of this. So yay, another surgery for my baby. While they’re doing this, I’m sure the pulmonologist will want to test for the PCD and biopsy whatever they need to do, and we might as well get an endoscopy in there as well.
I am really struggling with anger. I am SO angry that this is his life. I know what I wrote last time, but right now I want to be angry. I want to feel. I want to be sad. I want to cry. Why? Why does he have to deal with this? Why does my baby, who isn’t even 8 years old, have to deal with surgeries and shots and blood work and there are adults who have never had a surgery in their entire life?
I know I can’t compare. I know his journey isn’t someone else’s. I know God chose this journey for this child and it’s not my place nor right to question His plan. But right now I’m angry. I’m sad. I’m heartbroken. I’m exhausted. I can’t stop. If I stop, he will lose, and I can’t have that happen, so I keep going.
This is what it’s like being the mom to a Rare kiddo. Lonely. Isolating. Exhausting. Heartbreaking. However, I won’t give up. I won’t give in. I will keep fighting. I will keep supporting him. He won’t ever feel like I didn’t do enough to help him.
For now, though, I will be sad and grieve.